The Emotional Care of a Child with Crohn's Disease

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From the sharp pain of a flare to the anxiety of feeling different from others, your child with Crohn’s disease needs unique emotional care and support from you.

Join us as we talk to Frank J. Sileo, Ph.D., author of “Toilet Paper Flowers: A Story for Children About Crohn’s Disease,” about techniques for communicating with a child who has Crohn’s. He gives advice about how to start a conversation with your child, what to listen for in your child’s complaints or comments that can help you understand their needs, and when your child may need professional help to deal with negative feelings about themselves or their condition.

As always, our expert guest answers questions from the audience.

Announcer:
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Now here's your host, Rick Turner.

Rick Turner:
Most kids just want to be like everyone else, but when they have Crohn's disease, blending in can be a challenge. There is the physical pain, the emotional struggle of being different and often social awkwardness at school. So how can we support and empower children to deal with their illness? Hello and welcome to this HealthTalk webcast, The Emotional Care of a Child Who Has Crohn's Disease. I am Rick Turner.

Joining us to answer these questions is Dr. Frank Sileo, Ph.D., the executive director of the Center for Psychological Enhancement in Ridgewood, New Jersey, and he is also author of children's book, “Toilet Paper Flowers: A Story For Children with Crohn's Disease.”

Welcome to HealthTalk, Dr. Sileo.

Dr. Frank Sileo:
Hi, Rick. Glad to be here.

Rick:
Glad you could join us once again. So, Dr. Sileo, you yourself have Crohn's disease?

Dr. Sileo:
Yes, I do.

Rick:
And you also work with children who have the disease. I'm curious, did you write your book, “Toilet Paper Flowers,” because of your personal experience with Crohn's or because of what you were seeing in your practice or a combination?

Dr. Sileo:
Actually both. To start with, I wrote it for myself as a way of creatively turning lemons into lemonade, of dealing with my own illness and educating others about it. But I also wrote it because in my practice I was seeing children with the disease, and they would often ask me about it, and I have several books in my office about different kinds of diseases or different kinds of problems, and I read these books to the children. It's called bibliotherapy. And there was no book for children with Crohn's disease, so I decided to write my own to help bring awareness to the disease and help kids, validating their feelings and educating them as well as their siblings, their family, their friends regarding the disease, because oftentimes the focus of working with diseases is a medical approach, and we don't look at the psychological piece.

I was hoping to address that in “Toilet Paper Flowers” somewhat.

Rick:
Are you satisfied with the results?

Dr. Sileo:
Absolutely. The response to the book has been great, and when kids meet me, they bring me toilet paper flowers, which is incredibly touching and moving. I hear from kids saying their mom or dad bought them the book, and they use it to explain it to their friends or to their siblings, and so it's been great.

Rick:
Can you tell us briefly where that title comes from?

Dr. Sileo:
It actually comes from the story, in which the main character, Julia, makes flowers out of toilet paper when she is not feeling well, and it's a symbol of hope for the disease and to remind herself to stay healthy and take care of her body.

Rick:
Great. So when kids come to you, Dr. Sileo, what are some of the emotions that they talk about that they need help with?

Dr. Sileo:
It really runs the gamut: fear, embarrassment, guilt, confusion, powerlessness, rejection, isolation, anxiety, depression. So they really come in with all kinds of emotions, even anger and rage at times.

Rick:
Understandably. It's kind of hard for us as adults to think about this, but I would guess they process their emotions differently than adults. Tell us more about that.

Dr. Sileo:
They may not necessarily have the words to put to what they are feeling, so oftentimes kids will act out when they are angry. When they are scared or anxious about something, they may not say it. They may start acting out in different ways that are sometimes self destructive, or they may start acting out in the family. They don't always have the words for what they are experiencing internally, inside.

Rick:
Right, and we will talk more about some of those acting out actions later on when we focus on teenagers. But do you ever see situations where kids are handling their illness better than their parents?

Dr. Sileo:
Oh, absolutely. Sometimes the wisdom and the patience of children are things that we adults can learn from. They roll with the punches maybe better than we do. And that may come from the fact that being older and wiser we’ve experienced more, and so our anxiety levels may be higher. But at times I have met kids that show incredible amounts of strength as compared to their parents.

Rick:
So then you have to help advise the parents on how to cope.

Dr. Sileo:
Absolutely, because we want to make sure that the parents don't project their fears or their anxiety and worries onto the child. Sometimes parents are so anxious that it consumes their entire lives. I always encourage parents to be role models in how you handle situations, your job. Our job as parents is to provide safety and security to our children regardless of disease. But in this case, we are their role models, so we want to model how we can handle this disease and the disclosure of the disease and what is ahead for them with the disease.

Rick:
You mentioned a range of emotions that kids can come into your office with, and I want to focus on guilt for a second. Do kids actually blame themselves for their disease?

Dr. Sileo:
Yes, they do. They ask, “Am I being punished?” Sometimes it's a spiritual issue. They might get angry at a higher power. They do blame themselves. It's easier to get angrier at ourselves than Crohn's disease because we can't touch Crohn's disease. It's not something tangible. So kids do feel guilty and feel like they have done something wrong, that they said something wrong, or if they only behaved better, maybe they wouldn't have had Crohn's disease. Oftentimes they pick that up from their parents, again because parents often feel guilty for their child having Crohn's disease.

Rick:
Right. And perhaps in a sense of genetics, they are somewhat responsible. Not that they can do anything about their genetics.

Dr. Sileo:
Right. I had a mom once say to me, “Did I take care of myself as well as I could have during my pregnancy?” Which again would have had nothing to do with - no correlation with her child developing Crohn's disease later in life. But the guilt kind of trickles down sometimes from mom.

Rick:
We always want to have a reason for things, right? I must have done something, or something must have happened to cause this.

Dr. Sileo:
Correct, and especially to a child, because they don't understand disease. Kids are supposed to be out playing, and they are supposed to be having fun and all this stuff, and “How come I have to be at the doctor's office, and how come I have to go for these treatments, and how come when I take this medication my face turns round? How come I feel this way? How come I'm not growing?” All those kinds of issues come up, so blame and guilt can come from the parents, so parents need to keep their feelings in check.

Rick:
Let's talk about communication for a second, because clearly how and what parents communicate to children is very important to how their kids are going to respond to the illness. So how do you suggest that parents talk to their kids about their Crohn's disease?

Dr. Sileo:
Communication is key; I'm going to talk about my five C’s of parenting at some point later on, and communication is one of those five C's. When you are communicating with a child, regardless of disease or regardless of the issue, you always have to consider the age and developmental level of that child. So you have to word things or put things in the language that they will understand. Because with the disease we hear words we never heard before, like fissures, or ileocecal valve, all these different kinds of medical terms which to adults sound frightening and to a child sound frightening as well. So we need to take that into consideration - what is the age of the child, and where are they developmentally?

And the thing about communication with children is that when we acknowledge something as opposed to keeping it hidden or denying it or trying to act like it doesn't exist, we take the shame and the fear out of it. So when parents communicate with their children - and this is not only for the child with the disease, but also for the siblings - the parents give permission to talk about this and convey that there is nothing to be ashamed about, and that again takes away some of the fear and taboo.

Rick:
It absolutely does. And I am wondering, are there topics that a parent should say to themselves, “Let's not go there”? Is there anything that they shouldn't communicate to their kids about the disease?

Dr. Sileo:
Again, depending on the age of the child and the developmental level, obviously you are not going to talk to children about the higher risk of colon cancer with Crohn's disease or something that might be very frightening to a child. You don't want to talk about medical tests that the child may not have to endure or medications that the child may not have to take. I think you feed the information as you are getting it from your physicians and from the caretakers in the child's life, and then feeding information slowly and asking the child questions and if they understand and does that frighten them and what does that mean, so that you are not overwhelming the child, but you are also not hiding information.

Rick:
We talked earlier about the fact that children don't always verbalize their feelings very well, and sometimes they just don't share those feelings at all. Are there signs that parents can look out for that kids are in fact holding some really powerful feelings inside?

Dr. Sileo:
Yes. Negativity or bad feelings manifest in a number of ways. Mostly we see with children who are dealing with something emotionally and are struggling with it acting out. And that could be in flipping grades, not doing well in school. Usually school is the environment in which you will see where kids are having problems. They may be withdrawing from peers. Or when they used to, like, to go to ballet class or baseball practice or Boy Scouts or whatever organization or club they are part of, then all of a sudden they are saying, “You know what? I don't want to go. I don't feel like going.”

Or you might see an increase in sibling rivalry. The child is fighting more with their siblings than usual. I mean, there is a degree of healthy sibling rivalry, and “kids will be kids,” so to speak, but you are seeing them act out.

Rick:
They are channeling some of that negative energy into angry behavior?

Dr. Sileo:
Correct. Rageful behavior or withdrawn behavior. Again, they don't want to participate, they don't want to go to the sleepovers. They don't want to go to the activities that they would typically enjoy being part of.

Rick:
So can parents do anything about that? Can they encourage their kids to share those feelings and explain to them that expressing those feelings, good or bad, is a helpful thing?

Dr. Sileo:
Absolutely. And at times parents can encourage the healthy expression of emotionality, but sometimes a professional can be very helpful - because it's a third party, a psychologist or a mental health worker who is objective, who is not their friend, who is not their family member. It allows the child to say or be who they need to be without being judged by their family in some way. The first line would be a parent getting them to open up and talk about it, but at times the rage is so powerful, or the anger, or even the depression, or the anxiety is so strong that they don't care to disclose with their family.

Rick:
And that might increase as the kid goes into adolescence, right?

Dr. Sileo:
Absolutely.

Rick:
I want to focus on that in terms of the rebellious behavior and that sort of thing, because teens tend to push their parents away - I think we all did that - and with that goes communication. What are some of those separation behaviors that you see in the families that you work with, between the adolescent children and their parents?

Dr. Sileo:
Oftentimes, talking about acting out behaviors, adolescents may get involved with drugs, smoking, sexual behaviors, alcohol, not taking their meds, not doing their treatments, so it becomes an area of control and battle. As we know with Crohn's disease - and particularly with smoking, smoking is the worst thing anybody can do for Crohn's disease - so for an adolescent starting smoking or acting out in that way is actually destructive.

As I said, Crohn's can often become a battle with the parents, and they may use the disease as leverage to get out of things or to act out. Or if they are late getting home and they say, “Well, I am sick,” or they kind of play upon their parents' emotions in some way. So it may be manipulative. Oftentimes parents may cut the child or the teenager with Crohn's more slack, and I don't encourage that at all.

Dr. Sileo:
Absolutely, that builds resentment and anger in the siblings, because he is sick or she is sick, they get to come home later because they are sick all the time. A child may feel jealous toward their sibling with Crohn's because a lot of emotional, financial, social [because] a lot of energy is going into that child with the disease, and oftentimes the siblings might have to help out, or they might be not being able to do certain things because of the restrictions of the child with Crohn's. So definitely discipline should be consistent and stick with it.

Rick:
Yes. I'm sure the other children can feel ignored to a certain degree.

Dr. Sileo:
Yes, oftentimes. I work with families and try to encourage that the child with Crohn's disease is a child with Crohn's disease, not the Crohn's child. First it's a child, and then they have this disease called Crohn's disease. Really be consistent with the discipline, and make sure that rules are rules, and these are the family rules regardless of disease and regardless of anything else that comes along.

Rick:
Talking about some of these separation behaviors, the rebellious behavior of children, I am sure the consequences of these actions are real, physically real for the kid. And what sort of things can happen when a child rebels against parents, against medication, against all of these things?

Dr. Sileo:
There could be an exacerbation or a flare up - like I was talking about smoking, and smoking being really bad - or not taking their medication when they are supposed to or not participating in their treatment could really exacerbate flare ups and make their symptoms worse. They also may not follow the diet they are supposed to be following, so again, they are acting out, and they are going to have physical consequences.

The emotional risks with open rebellion are depression, anxiety, rage and possibly suicide, which would be the most horrible thing, an emotional risk for a child regardless of disease, but suicide is part of depression, unfortunately.

Rick:
Yes. You mentioned smoking as absolutely the worst thing you can do. Does that extend to smoking pot?

Dr. Sileo:
I don't really know the studies on that, but people have to talk to their doctors about that. I'm not pro-drugs, so I am not going to encourage my adolescents or my adult patients to smoke pot as a means of coping with their illness. But I don't know the effects of marijuana on the GI tract. I don't know the data on that.

Rick:
What are the consequences of drinking alcohol?

Dr. Sileo:
I think some of the research shows that with moderation it can be alright - some of it, for some people. See, that's the thing about Crohn's disease. Whether it is alcohol or certain kinds of food, it affects everyone so differently. So to say, okay, wine is fine, but beer is not, no one is going to make that kind of statement because it's different for everyone.

But if someone is on medication they really need to refrain from drinking alcohol. They need to think about that. And some of the medications, the immunosuppressives or the steroids, you really should abstain from alcohol.

Rick:
You mentioned suicide, at least suicidal thoughts, as a possible consequence. How common is depression in teens with Crohn's?

Dr. Sileo:
It's pretty prominent amongst even young children with Crohn's disease. I would say anxiety and depression kind of run together, but a lot of teenagers that I see in my practice are depressed about having it. And depression is often manifested in rage and anger and acting out behavior, so you will see it's not purely rage. It may be underneath is an underlying depression.

Rick:
So, we have touched on the five C's, of parenting, which should help communication between parent and child. So what are the five C's, and how do parents use them?

Dr. Sileo:
The five C's are the things that I talk to parents about, about parenting in general, but with the disease I also include the five C's. And they are communication, consistency, control, cooperation, and consequences. I will explain them.

We talked a little bit about communication, and the piece of communication about openness and being available and making time for communications is key. As far as consistency, we are talking about discipline. That regardless of disease, if you want your child home by 11 and they are home by 11:30, that you need to be consistent with discipline regardless of disease, barring that something happened. Consistency in parenting and in discipline is usually what most parents struggle with.

Control - Now, Crohn’s is a disease of feeling out of control, but when I am talking about parenting, I mean that the parent needs to be in control, because when they are in control, that provides safety and security and sends the message of safety and security throughout the home. They need to be in control in the sense of making rules and following through with certain things. Imagine working for a company and your bosses are not in control - they are kind of all over the place. As workers you would feel very anxious and not very happy about working there. So control is really important, and control usually is a negative word, but I mean it in the sense of providing safety and security and stability.

Cooperation is talking with your spouse, your partner about what are the rules, what are the limits and boundaries you are going to set here. How are you going to handle certain things? So you have to have cooperation amongst heads of house, otherwise you have a lot of anxiety and a lot of disruption. Who is going to drive to medical appointments? Who is going to pick up, etc? How do you balance not focusing exclusively on the child with Crohn's, and how do you balance out the other siblings?

Rick:
Right, and if the parents don't agree on approaches, the kid might be getting mixed messages.

Dr. Sileo:
The last one, consequences, is what are the consequences if the kids are late. You told them to be home at 11 or you asked them to do something and they are not doing it. You need to follow through with consequences. Because if there is no follow through, then what does the rule mean?

Rick:
You mentioned earlier there may be times when professionals are needed to step in and help with communication or whatever else is going on. How does a parent know when it's that time to seek professional help?

Dr. Sileo:
When you see acting out behavior that may be exacerbated or intensified, when you see your child withdrawing, when the school is calling you and saying that Bobby hasn't been handing in his homework, when he normally would be a good student, or there has been some school problems, fighting at school, and peer problems. When kids are withdrawing from their friends or fighting with their friends more frequently, that may be a good indication that we might need to seek professional help.

Rick:
Do children sometimes refuse that help?

Dr. Sileo:
Teenagers? All the time. It's wonderful when kids can elect, and again they can feel somewhat in control, to come to therapy and/or seek professional help. And what I would say to the parents is, “Listen, try to compromise, go see Dr. so and so for three sessions. Just go see him or her, and we'll see how it goes.”

If you compromise, if you make it so they can feel a little bit in control of the situation, they may be more apt to participate. Hopefully the clinician can develop a rapport with the patient and help them to stay in treatment. As I always say to my patients, my patients with a severe mental illness come in on Saturday. Today is Thursday, so you're okay. Because a lot of kids come in thinking, “I have severe mental illness to come in and see you.”

The other thing I tell parents to do to get them hooked into therapy is harness a guidance counselor at school or a teacher that the child really respects or even their gastroenterologist or a rabbi or a priest or someone in their community, a coach who they really value. Sometimes, if it comes from a different person, not their parents, it can really help that child think about it and say, “You know what? Alright, I'll do it because coach asked me to do it, not because my mom wants me to do it.” And then again, the child feels a sense of control, and they might feel better about it. But the bottom line is the goal is getting them in.

Rick:
Good. We mentioned earlier that children with Crohn's face many awkward and uncomfortable situations at school and elsewhere socially. Dr. Sileo, can you describe some of these for our listeners? What have you seen?

Dr. Sileo:
A lot of my children talk about private bathroom needs, that they might not get a private bathroom in school or in public. They worry about making noises in public, and we know what those noises are. They have anxiety about knowing where a bathroom is. They may go to a sporting event, and then where is the bathroom, and having to wait in line for a bathroom. They worry about telling friends about the disease. Eating with friends - all his friends are going to a fast food restaurant, and they can't go there.

And then all of a sudden, they are out of school because they have been sick or they've had to be at the hospital. So how do you explain that to your friends? Sleeping overnight at someone's house, sporting events, playing soccer in a big field and no bathroom in sight - lots to deal with.

Rick:
These things like those bathroom noises and the diarrhea and everything else, I am sure it can make a child feel self conscious, feel embarrassed. How do you talk to kids about really being emotionally exposed in such a personal way? And how do they learn to live with it?

Dr. Sileo:
What I try to do is harness some humor about this, and I tell them, when you go to the bathroom, listen. You are not the only one making bathroom noises. And they actually come back and report to me. When you have this, you are so self conscious that you forget that there are other people in there making maybe worse noises than you. So we try to normalize it as much as possible. Unfortunately this is part of the disease, and getting them to accept that.

I also encourage my patients to have Crohn's or colitis kits that they carry with them with toilet paper, toilet seat covers, maybe Lysol wipes to wipe down a toilet because sometimes they are in a gas station, or they are someplace undesirable. And this again makes them feel more safe and more in control.

Rick:
I also understand that children who have Crohn's may go through puberty later than their peers, I guess because of the retarded growth. What effect does this have on kids both emotionally and socially?

Dr. Sileo:
Correct. It's huge because body image issues are so important for teenagers and for kids to begin with. I mean, our culture gravitates towards thinness to begin with, but my male patients have a hard time with being thin. They view themselves as being weak and inept, and sometimes people make fun of them because of the fact that they can't gain weight or that they are thin. So there's a lot of anger and frustration and grief and loss over this reality. They may eventually catch up to their peers, but it just may take a little bit of time.

Rick:
Anything you can do to help them cope with that?

Dr. Sileo:
We process those feelings. We talk about it, and we talk about that with their doctor, maybe that there are other options that they can do to help them either gain weight or to grow, certain supplements that may help them in their lives. So that's where the psychologist or the mental health workers can work as a team with a nutritionist or with their gastroenterologist.

Rick:
Let's move on to the issue of disclosure about Crohn's because I am sure that kids would like to hide it from the world. Especially for a young child, to whom and when is it appropriate and necessary for parents to reveal their child's Crohn's disease?

Dr. Sileo:
I think it's really appropriate, and I think school administration needs to know. I think the nursing staff needs to know in the school, some teachers, phys ed teachers. Children may not have the stamina to do what they need to do in phys ed classes, and they may be labeled as lazy or get lower grades as a result of their lack of participation. The office of disability asserts that they have rights because of having this disease, and they should exercise those rights.

For teenagers, I think it's important to teach adolescents to advocate for themselves, to teach them how to tell people “This is my disease, this is what I have, this is how it affects me, and this is what I am going to need.” And I think that's a valuable skill once they've owned the fact that they have Crohn's disease.

Rick:
So it shouldn't be all on the parents at that point?

Dr. Sileo:
No. I think we should teach kids to stand up for what they need.

Rick:
When it comes to teenagers in particular and their friends, when should children disclose that information? Does there have to be a certain level of trust established?

Dr. Sileo:
Trust is always important in disclosing anything to a friend. There has to be a level of trust and understanding and empathy. Sometimes my patients have realized that some of their friends aren't their friends, and they have lost friendships as a result of having a disease, and that's always disheartening and very difficult for young children as well as adolescents to grapple with.

Rick:
Right, and we would sort of assume that kids are teased for this. Is that a correct assumption?

Dr. Sileo:
Yes. Often.

Rick:
In your book, “Toilet Paper Flowers,” we mentioned earlier, Julia who is the central character, reluctantly reveals that she has Crohn's disease, and she tells her new friend Nicky, and she gives Nicky a lot of physical and emotional information. For our listeners who have not read the book, what are some of the basic pieces of information that kids should share about their illness?

Dr. Sileo:
I think what it is/what it isn't - in the sense that they can't pass it on to somebody; that because I have Crohn's disease, you can't get it; that I'm not going to die from this disease; that sometimes these medications I take make me feel kind of crummy, or that's why my face is round, or that's why I have developed acne; that's why I have missed school. I mean it's more than just a diarrhea disease, and I think we need to explain to people that it's about pain. It could be about not only abdominal pain, but joint pain. It could affect the eyes. You can have a low grade fever. So it's more than just diarrhea. Some of my patients don't even have diarrhea as a symptom.

Rick:
And would these bits of advice apply to a 9 year old and a 16 year old equally?

Dr. Sileo:
I believe so. Interestingly, in my practice it's harder for the younger kids to disclose and understand than my adolescent kids. But although lots of kids today, at least from my perspective, are just becoming more sensitive to things. Like we will hear that someone has a peanut butter allergy, or someone is lactose intolerant, and these kids know this stuff, and they know like, “Oh, the peanut-only table.” They are very open and aware, which is a great thing that shows we are becoming more aware of people's individual differences. Because kids have asthma and kids have inhalers carrying around with them. Unfortunately, I don't know if that says something about our culture is getting sicker, but kids are a lot more open.

Rick:
Yes, and tuned in.

When it comes to dating, as we start our dating years, we have to share this at some point with our date, so what do you advise in that category?

Dr. Sileo:
I think when someone is comfortable. There is no specific time, like, if I said on the third date, you should disclose. Again it has to be on an individual readiness basis, and it's how we present things. I think when we feel comfortable with something, when the child feels comfortable or the teenager feels good about Crohn's disease - and I mean that in the sense of comfort level - then when we present it to other people, they are not so horrified by it because they can feel our non-anxiety about it.

Rick:
Now, you work a lot with kids and their families, Dr. Sileo. Can you share with us a story perhaps of a family who was struggling with Crohn's disease and found a good solution?

Dr. Sileo:
I do have a case that I just ended. I had a 13 year old boy, and we will call him Joe for confidentiality reasons. This boy has no colon, and he came to me because of depression. He wasn't growing, and he was very depressed and withdrawing from his friends, and he refused to eat. So in the beginning after establishing rapport, he knew I had Crohn's disease, and he really liked the fact that I had it because he felt that I really understood what it was like.

We started to do walk and talk therapy where I would take him out, and we would go walking and talk about different things, not specifically about Crohn's, but just about life and life issues as a teenager. Oftentimes our therapy sessions would be about eating. We would stop off and eat something. So I got him to eat and realize that eating was a good thing and that you didn't have to always have anxiety around eating.

He also felt very isolated, so I got him involved with the Crohn's and Colitis Foundation of America, which is ccfa.org, and he went to their camp. They have a camp every year across the country. It's called Camp Oasis, and it's for kids. He went to this camp - he was a little resistant in the beginning, but he went and met other guys and girls that had Crohn's and colitis, and he made terrific friendships and just felt so validated.His eyes really opened to the world around him, and he realized he wasn't alone.

But when he came to see me, he was angry, and he was alone. He was not eating like he should, not gaining weight, and he was just kind of wasting away to nothing. So our therapy really consisted of walking and talking, and our therapy sessions consisted of eating, and so it helped me gain some weight as well.

Rick:
Indeed. And were the parents involved with Joe?

Dr. Sileo:
The parents were involved, and we did a lot of parenting work. He has a younger sister, so at times we would have some family sessions surrounding sometimes her anger and resentment about mom and dad's energy flowing to Joe all the time. And also her fears about Joe, and would he be okay in his life? So it really opened up the floodgates for a lot of emotions in the family that may not have been expressed before. So I am hoping all benefited from the experience, not just Joe.

Rick:
Exactly. We have a lot of e mail questions coming in, Dr. Sileo, so let's get right to them.

The first one comes to us from Wilmette, Illinois, and this listener writes, “How can I get through to my teenaged child that it is important to continue to take his meds even though he is in remission and is feeling better?”

Dr. Sileo:
That's a huge problem amongst teenagers with Crohn's and a lot of other illnesses, but there is that mentality that “I have taken the meds, I feel better,” so therefore they have this fantasy that they are cured. And I think the gastroenterologist or the team of nurses or doctors who are working with that child need to talk about the importance of maintenance, of maintaining the medication despite feeling well so that it reduces future flare ups. That if you maintain this level of the medication and care, that you may have reduced flare ups, and actually have less problem with your colon or wherever the Crohn's disease is located later on.

Rick:
Do kids normally get that?

Dr. Sileo:
Sometimes. Not all the time. Kids need to understand that if they don't take care of themselves, they can end up in the hospital. Surgery could be an option. If their health really deteriorates, they could be out of school for longer periods of time. Sometimes they don't get the picture. Teenagers are egocentric.

They think they know everything. For the adolescents who are listening, they do know a lot of things, but it's part of their development to think no one knows better than they do. That's sometimes where a mental health professional can also be helpful in breaking through some of that way of thinking.

Rick:
The next e mail comes from Puerto Rico, and this listener writes, “How can I help my grandson of nine years to cope with this disease and teach him that his bathroom habits will change over time, but now he is still a child with dreams and goals? I want to help him forget about the bathroom thing as a priority during the day.”

What's your reaction to that?

Dr. Sileo:
That's a hard one, not knowing the patient. I mean, the bathroom thing may be a real thing for this child, and they can't not think about it. I don't know if it's true for this e mailer, but oftentimes people say it's in your head. “You are stressing out. You are worrying yourself too much, so stop thinking about it and you will feel better.” It's not like irritable bowel syndrome where stress is an exacerbator of that. So for this child, I don't know if he has to use the bathroom all day long and if that's a reality for him. Maybe if she can help him focus on ways that he can be healthier, how he could eat healthier, how he could be physically exercising and work on his body, work on his stress, work on his feelings so that there is less of a problem later on in life. But the reality is that if he is having a flare up and he needs to use the bathroom it's hard to get your mind off of that.

Rick:
Next e mail from Mechanicsville, Virginia. “How do I know if my 4 year old is being honest about her pain? It is so hard to tell sometimes.”

Dr. Sileo:
The question would be, what motivation would a 4 year old have to lie about it? Is it to avoid a task in certain ways or at certain times, like to take a bath? You know, “I am feeling pain in my gut when I have to take a bath or when I have to do something that [I don’t] want to do. So, it's really hard.

Rick:
The timing of it?

Dr. Sileo:
I would be very concerned about why would a 4 year old have to lie about that.

Rick:
Do you ever see that in your practice?

Dr. Sileo:
Not that young. I have seen kids using Crohn's as an excuse to get out of things, for sure, like your teenagers or even your middle school kids. Sometimes, you have to kind of go with it, but sometimes it's very obvious when it can be manipulative. We know our children and we know sometimes when they are lying, but a 4 year old, that's very young to be kind of manipulating.

Rick:
I would think. An e mail from New Jersey, your neck of the woods, Tenafly. “How do I deal with my 13 year old son who has Crohn's and refuses to eat until after school for fear that he may have to go to the bathroom during the school day? His weight has become an issue, his lack of weight.”

Dr. Sileo:
Yes, that is a huge problem. They won't eat before a game or whatever. What I try to encourage parents to do is encourage their children to see a nutritionist. Maybe there are foods that the child can eat throughout the day that don't upset their gut. And some doctors will recommend eating smaller meals throughout the day instead three big meals for Crohn's patients so that they can have something in their stomach.

Oftentimes kids misread the signals. When they are hungry and the stomach is growling or their bowels are moving, it's not that they are going to have diarrhea, it's that they're hungry. So when they come to my office, I say, “You need to put something in there that's gentle so that you don't misread the signals.” So maybe seek professional help with a nutritionist, or even a mental health worker who can help with some of the thoughts, “If I eat this, then I will get diarrhea,” which may or may not be true.

Rick:
Next e mail comes from Chappaqua, New York, and this person says, “What is the appropriate balance between forging on with a level of what they call healthy denial, if there is such a thing, as opposed to expressing one's distress, one's feelings?”

Is there such a thing as a healthy denial?

Doctor:
I think that there is - I don't like the word denial and healthy. I don't think they go together. I think there is a time and a place in which you need to compartmentalize and say to yourself, “Okay, you know what? I have this disease. I don't need to talk about it 24 7. I don't need to have all my conversations with people and my friends and family about this disease. I need to just live my life, and I need to think about other things at times.”

Like right now, I would teach my patients to live in the present. And I tell them to wiggle their toes, and that reminds them that they are here at this moment and not to worry so much about what tomorrow is going to bring. I don't know if that's a healthy denial or just kind of living in the here and now, because I always encourage having a realistic attitude toward the disease, and that means you are going to have good days and bad days with it.

So for this e mailer, I think there are times that you need to kind of put it on the shelf and carry on your life and go on that date or go see that movie or do what you need to do. Go to that restaurant. Do what you want to do. And it doesn't mean that you are denying it. It just means that you are saying, “You know what? I'm not going to let this get to me today.”

Rick:
So appropriate reaction, but not healthy denial.

We have a question about a child with special needs. Indianapolis, Indiana is the source of this e mail. “My 14 year old daughter has Crohn's disease, but she also has Down syndrome. So far she has not expressed much worry or anxiety about living with Crohn's, but I worry that in the future she will feel differently. How can we prepare her now as a child with special needs for her future with Crohn's disease?”

Dr. Sileo:
I think if she is not really complaining about it right now, there may be other needs that she is having. The special needs or Down syndrome, those needs need to be addressed first. At some point maybe talking about it - I mean, we don't know if she is going to have a problem with Crohn's disease later on down the road. Again, this goes back to the wiggle your toes, stay in the present, don't get too ahead of yourself, because again this information may be overwhelming or unnecessary. Maybe when she is older, there will be a cure for it, and that whole point will be moot, which would be a wonderful thing.

I think we need to pace. When I talked earlier about age and developmental level, where are they at in their age and developmental level? So if she is not having symptoms or complaining about it, it may be something that you just want to keep on the back burner and focus on other things, such as building her strength and her ability to express emotions period.

Rick:
Yeah. So don't worry about that until she expresses some type of need.

Dr. Sileo:
Yeah. As long as she is not in denial about it. You know what I mean? If she is expressing concern and worry about, “Why do I have this pain or why am I going to the bathroom all of the time or why do I have to have all these tests?” Then you might address the issue.

Rick:
Okay. Berkeley, California, this e mailer writes, “How can a parent provide physical comfort for a child with so much physical and emotional distress, pain? It is difficult to tell if touching hurts.”

So what can a parent do when you don't know what to do physically, I guess?

Dr. Sileo:
Well, not knowing the situation, but what feels good? Is it okay if mom holds you this way? Does this hug hurt you, because I want to [hug you]. I want to give you and show you affection, and I am not sure how, but I am very respectful of your pain, so tell me how it would feel good. Maybe just cuddling with someone's arm might be that physical affection, might be the way of communicating affection and love.

And asking the other person; they may not want the affection at that point. If they are an adolescent, they might be like, “Get away from me.”

Rick:
An e mailer from Maryland writes, “What are your thoughts on anti-depressants for teenagers who exhibit depression signs and symptoms due to not only the diagnosis but the side effects of all the meds, such as long term prednisone?”

Dr. Sileo:
Right. I am hesitant to answer that question because I am not a psychiatrist, and psychologists do not prescribe medications. Some of my adolescent patients are on anti-depressant medications for various reasons, and I know that there are risks. There are GI risks to some of the anti-depressant medications causing diarrhea, so that could be a problem. And in the news there have been studies about suicide risk and anti-depressants in adolescents. So parents need to talk to their doctors about that and make prudent choices based upon the severity of depression.

The research has shown that cognitive behavioral therapy, that psychologists and mental health workers can conduct, can be as effective as medication in helping depression and anxiety symptoms. So you may want to look at a nonmedical approach.

Rick:
Next e mail comes from Plover, Wisconsin, and it's part two of the “faking it” question. “My grandson has Crohn's disease. He is 13. He is sick all the time. I really believe sometimes he uses it for an excuse not to go to school. Or is it true that he can be, in fact, sick all the time?”

Dr. Sileo:
Yes. It can be true that he is sick all the time, for sure, and at times, it might be manipulative. That's something that I have experienced in my practice. This goes back to those five C's about cooperation and consistency. What are the rules? What are the criteria that someone needs to stay home from school? Is it a fever above 101? Is it diarrhea, repeated diarrhea, vomiting? What are the criteria that parents decide? Then you can stay home from school based upon these things. And working out a contract with them, with their child to say this is when you go to school and this is when you stay home.

At times it's very difficult because pain is not something visible. Pain is self reported, so we never know if Johnny is saying, “My stomach hurts, how much of that is true and how much of that is manipulative?” Getting school personnel involved is very helpful in those kinds of instances.

Rick:
Shrewsbury, Massachusetts, the source of the next e mail. “My son is 4 years old, was diagnosed at the age of one. How would I talk to him about this? He knows his body is different than everyone else, can't eat certain things, but he often gets upset about it. Any tips on communicating with a 4 year old about Crohn's?”

Dr. Sileo:
Yeah, that's a really hard one. I think children go by example, and they also don't understand certain words. They know behaviors, and they know how to look at you as their role model. I think very simple language about the disease and about the limitations. I am not pushing “Toilet Paper Flowers,” but that may be a resource for explaining some of this to them. I don't know if they have support groups for children that young, but Crohn's and Colitis Foundation of America has support groups across the country; maybe speaking to the local hospitals and seeing if they have support groups [would help], and again maybe an individual kind of therapy, a psychoeducational kind of therapy for the child.

Rick:
The Crohn's and Colitis Foundation again is ccfa.org.

Dr. Sileo:
It's ccfa.org, a great organization for information. They even have a Web site for kids for Crohn's and ulcerative colitis. And so there are a lot of resources on that Web site, and people should check it out and become members.

Rick:
Okay. Time for one more brief response to a question from Tacoma, Washington. “Where can I find out more information about summer camps for kids with Crohn's?”

Dr. Sileo:
At ccfa.org. They actually have a tab on their Web site for Camp Oasis. And they will give you all the information. Now is when they are forming, getting information, so you would want to kind of jump on that now and see in your area where they would be having it.

Rick:
And they have them all over the country, you say?

Dr. Sileo:
Yes, and if you can't afford it, you can find sponsors, and CCFA will sponsor kids. So it's a really great, great place for kids to be together and not just about Crohn's. They do a lot of fun things that other campers do.

Rick:
Great. And with that, I am afraid we are just about out of time, Dr. Sileo. But before we go, where can our listeners find out more information about you and your book, “Toilet Paper Flowers”?

Dr. Sileo:
They can find “Toilet Paper Flowers” on amazon.com, or on barnesandnoble.com. My publisher's Web site is healthpress.com. So any of those. If they go to their local bookstore and they don't carry it, they can order it for you. Some libraries have it. So you may just want to check around, but definitely you can order it off of Amazon or also on the ccfa.org Web site. You go into their books, and they are selling it there as well. I believe some of the money goes back to Crohn's and Colitis.

Rick:
Excellent. Well, thank you very much, Dr. Sileo. We have enjoyed the hour.

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